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Your copy to take home
The newsleTTer of ferTiliTy new Zealand, a regisTered chariTy supporTing people wiTh ferTiliTy issues
Page 4Meet one of Fertility NZ’s most amazing support volunteers!
Page 6In it together: supporting each other through their fertility journey.
INSIDE THIS ISSUE
• A word from the President
• About Fertility NZ
• Fertility Week 2019 in review
• Stuti’s run: raising money and awareness
• We’re in this together: a long, ‘unexplained’ fertility journey
• Noticeboard: events roundup
A new community for Donor Conception and Surrogacy wha-nau welcomes you
You spoke, and we listened. The new Donor Conception & Surrogacy network has been borne out of feedback from our community – people want to connect with others in similar situations, and learn from others who have walked certain paths before them.
New Zealanders who are considering donor conception or surrogacy, are undergoing a journey to build their wha-nau in these ways, or already have children through donor conception or surrogacy, are invited to join the Network. The group is a ‘Closed Group’ on Facebook – your identity can be seen by other members of the group, but remains anonymous to everyone else.
The group will provide advice, support, and facilitate discussion. It is a safe – and positive – space for all. During February
november 2019
2020 there will also be webinars on Disclosure (how to talk to children about their origins, which is also important for those considering donor conception/surrogacy).
The Donor Conception & Surrogacy Network is led and managed by eight people who have all walked different journeys in this area, including a single mum by choice, couples, an embryo donor and more.
We look forward to welcoming you into the group to share in the wha-naunatanga, gain support and advice and celebrate these wha-nau forms.
Join today: search Donor Conception Network NZ on Facebook (screening questions apply)
Lendinga hand
Fertility new Zealand is committed to supporting, advocating for and educating all people who face fertility challenges.
Fertility NZ was founded in 1990 and is a registered charity. It operates on a national level and much of its work is undertaken by dedicated volunteers. Fertility NZ provides assistance for people with fertility issues through the following channels:• Support A network of regular support gatherings, workshops and contact groups throughout the country; an 0800 line and email address for enquiries, and infertility forums on our website where members can provide support to one another.• Information Fertility NZ’s website www.fertilitynz.org.nz is the focal point of information; informative fact sheet brochures are available for members and through clinics; regular publication of The Dandelion newsletter and email updates to members; conferences and information events. An annual campaign to raise awareness of infertility and fertility issues.• advocacy Representing the voice of people affected by infertility on medical, ethical and policy issues.
Our visionFertility NZ has a vision of a ‘fertility friendly’ and fertility-aware New Zealand where:• Infertility is recognised, understood and
supported;• All men and women faced with
the medical condition of infertility have access to appropriate, timely and fully-funded medical treatment;
• Men and women have all the information necessary to enable them to make informed decisions regarding their fertility;
• Young New Zealanders learn about fertility preservation;
• Fertility and all alternative forms of wha-nau-building are respected and valued.
About Fertility new Zealand
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Welcome Notes Welcome to The Dandelion newsletter.
Controversy, debate and interest surrounded the birth of New Zealand’s first IVF baby in 1984. Since then, the technology and science behind Assisted Reproductive Technology (ART) has advanced dramatically, and now around 2% of all babies born in Aotearoa were conceived via ART.
Since the 1980s, society’s definition of wha-nau has also widened dramatically with a range of family forms found in every community and the growth of ‘third party’ reproduction.
Today, many wha-nau are built with the help of donors and surrogates. Family types include single people, heterosexual couples and families from the LGBTQI+ community. All these groups share a deep longing and determination to become parents; and later gratitude to the generous donors and surrogates that enabled their much-wanted children.
We are delighted to launch the Donor Conception & Surrogacy Network – an opportunity for support, connections and learning from others who have walked the path that you are either considering, or are on already.
Fertility Week: the missing kiwis was the theme of our annual awareness campaign held in September. In a diversion from previous campaigns, ‘the missing kiwis’ recognised the whole-person experience of infertility, including the grief, loss and lack
of control often felt. It was great to meet many
of you during our events and webinars, and we are especially grateful to all those people within our community who shared their stories to help others. Once again our volunteer network around the country did wonderful work in ther communities during the week, running local events and support groups. Read more about Fertility Week: the missing kiwis on page 3 and Billie-Jean and Vili’s story, shared for Fertility Week on page 6.
Every so often, someone from within our community comes forward to personally raise funds for us.
This year, Stuti wanted to ‘give back’ as she felt the support we’d given her during her journey was invaluable. She ran the Taupo half marathon to raise both awareness and funds for Fertility NZ. Her story can be read on page 4. I’d like to personally thank Stuti for her incredible efforts!
Wherever you are on your journey, we are here to support you. We provide information, support and impartial guidance; and we understand the challenges you’re facing. Contact your local group (see the back page) or call our Helpline. Connect with us today, and let us know how we can help you.
Warm regards,Juanita Copeland – President
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A meSSAge From The DANDelioN’S SponSor, bAyer
FerTiLiTy Week in revIewThe missing kiwis campaign pulls heartstrings across the country
Grief, loss, stress, social withdrawal, loss of control – these are all common experiences for people facing fertility challenges. However, they are not often spoken about, which is why the 2019 Fertility Week campaign sought to highlight the non-physical aspects of infertility and the impact it can have on the whole person.
During Fertility Week, 23-29 September, many of you joined us for informative webinars and events; read the stories and advice on www.fertilityweek.org.nz and engaged with us on social media. News media around the country were also interested in the campaign and there were many stories, features and articles.
How can friends and family support you on your journey? Although well intentioned, many wha-nau and friends admit that they don’t know what to do – or even what to say – especially if their own journey to parenthood was straightforward. Fertility Week provided guidance for wha-nau and friends as well as a Webinar on the topic; explaining the experience of infertility and giving
tips for supporting people affected. This information was widely read during the campaign and we sincerely hope that it helped many families across New Zealand.
If you missed the webinars during Fertility Week, recordings are available for the below at www.fertilityweek.org.nz/events
• I can’t fix it, but I’m here for you: how to support wha-nau & friends, or partners, through infertility. With Andy Leggat, Health Psychologist
• Advances in Embryology. With Dr Debbie Blake, Scientific Director
• Calling it Quits: Considering a future without children. With Megan Downer, Counsellor
• Exploring Donation & Surrogacy. With Fiona McDonald, Counsellor
• Navigating Fertility Treatment. With Dr Olivia Stuart, Fertility Specialist
• Self-care during infertility. With Joi Ellis, Counsellor
We are excited to announce that the Elevit Facebook and Instagram sites are now live. It’s fantastic to now have a social presence for Elevit in New Zealand and help educate Kiwis on the benefits of the premium pregnancy multivitamins Elevit with Iodine and Menevit for wherever they are on their pregnancy journey. Furthermore great to be able to create a community where women and men feel encouraged and supported and can also ask questions via direct messaging and can receive trusted feedback.
Check out the new sites at FACEBOOK: Elevit NZINSTAGRAM: elevitnz
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Stuti’s run for us!
Thank you Stuti! This wonderful woman ran 10kms in Taupo to raise money for – and awareness of – Fertility nZ.
As a Charity, Fertility NZ relies on donations to help us keep doing the important work we do, and contributions are gratefully received!
Stuti attended the Support Group in Auckland during the journey which resulted in her and Eddy’s beautiful daughter. In addition to her wonderful efforts with this event, Stuti is also now helping our community as one of our support volunteers in Auckland. What a generous, kind and determined wahine! Stuti, please accept our heartfelt thanks for your hard work and generosity.
Stuti’s story
“Our relationship with Fertility New Zealand started about three years ago, though our (in/sub) fertility journey began much earlier.
As a career-focussed couple, we never gave too much thought to what
age we should be thinking about children. The first couple of years of ‘trying’ or simply ‘not NOT trying’ passed by quite quickly. After almost two years, we were starting to wonder if we did have any issues. I was thinking about a certain family history in the back of my mind. After discussing with a few of our friends I decided to book a specialist consultation straight away.
Initially, there was nothing obviously ‘wrong’ with either of us, but further tests concluded that I pretty much had non-existent AMH levels and I was potentially en-route to early menopause. Something I knew all along yet was not prepared to hear in my early thirties. Therein started a long journey.
From hysterosalpingogram (HSG), lipiodol, Intrauterine Insemination (IUI) to uterus wall scraping and In Vitro Fertilisation (IVF), I have had it all done. All privately funded except
one IVF. As a couple, we then had a few ‘last’ options: opt for an egg donor for our second and last funded cycle or consider adoption or stay happy as just ‘us’. We accepted all three!
While we started writing an advertisement for an egg donor, we also did the required workshops organised by Oranga Tamariki to adopt a child. It took us a while, but we were also feeling content with ourselves. We had decided early on that after every (failed) cycle, we would do something special for ourselves. So we started going on small holidays after each failed one.
Just when we had decided to ‘move on’, we got pregnant with our miracle child. Our daughter is almost 11 months old now. At the same time, we are continuing our quest to adopt a child.
Through all this, Fertility New Zealand has been an excellent support system. We have made some life-long friends during this journey.”
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“We had decided that after every (failed) cycle, we would do something special for ourselves. So we started going on small holidays after each failed one. Just when we had decided to ‘move on’, we got pregnant with our miracle child.”
Stuti, eddy and baby Yanika enjoying a holiday in Europe as a family.
My husband and I began our fertility journey in March 2015 not thinking we would ever have fertility problems and prior to then, barely knew anything about them at all.
After one year of trying had passed and we had no luck, we started to undergo the necessary tests with our doctors.
On holiday in November 2016, we found out we were pregnant and were over the moon that our prayers had been answered!
Unfortunately at eight weeks, we lost our baby through miscarriage. We had to start all over again. We continued with multiple tests and continued trying to conceive while carrying our hurt grieving for our lost baby.
We were then diagnosed with Unexplained Infertility – This was because we’d both passed all tests, some with ‘flying colours’ – but there was no answer as to why we weren’t having any luck falling pregnant.
Our heartbreak from the miscarriage had turned into hope –the only hope we had – that if we had become pregnant naturally once, surely it could happen again?
The hardest thing about having Unexplained Infertility meant we didn’t qualify for Public Funding as we had to have been trying for a minimum of five years. It may not be long for some – but to us it felt (and still does feel) like a lifetime!
We tried our best to continue life as normal and not let this fertility struggle affect us negatively, weaken us, or worse, affect our relationship.
We were fortunate to buy our first home in the meantime and we got married – I couldn’t get through any of this heartache without my husband by my side. We continue to
overcome every month, obstacle and test together and come out stronger at the other end.
Being told I had to wait five years in total before getting IVF funding affected me mentally and emotionally to the point where we actually wanted something to be wrong with one of us. That way we could a) Have some sort of answer to our frustrations and b) qualify for public funding. Just saying that sentence is sad!
After multiple tests, specialists then thought I was presenting signs endometriosis and they also then told us there were no other procedures or tests to take at this point.
So after three years of trying, I underwent a laparoscopy through the public hospital in Palmerston North to remove the endometriosis. For the first time in a long time I was happy and felt we were making some progress and going to get some answers. The doctors as well as my husband and I were all hopeful that they were going to find some endometrial tissue. If it was the ‘cause’ of our infertility, we could then remove it, be ‘healed’ of it and able to continue our fertility journey as we should!
When waking up from the procedure feeling all four incisions across my stomach, it was a great indication tissue was found and removed so Vili and I both felt hopeful it was a success! We were then informed
by the doctor a couple of hours later that although they did find endometrial tissue and removed this, it was not in a position which would have any effect on infertility. We were left again without answers, no changes and the worst part, it wasn’t ‘enough’ of a problem to then qualify for public funding, STILL.
Feeling hope again
After three and a half years of trying, we made the call to undergo a cycle of IVF – privately.
This meant getting a loan from the bank on our mortgage. Money didn’t matter at this stage for us because we were given hope again, it had been a while since we felt this.
September 2018, we began IVF. This consisted of self-injecting my stomach each day, taking pills and then having scans to track our progress before travelling to Wellington’s Fertility Clinic to undergo the process of egg collection then a secondary procedure of the embryo transfer. This alone felt like another journey we were on, a scary but exciting (and hormonal, my husband would say) rollercoaster!
During the process, we had only one embryo survive out of seven so the embryo which was implanted in me felt like our one and only hope, our miracle one – now having no ‘back up’. The embryo was implanted on Day 5 and just before it was time to take the final pregnancy test, we lost the baby.
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“The hardest thing about having Unexplained Infertility meant we didn’t qualify for Public Funding as we had to have been trying for a minimum of five years. It may not be long for some – but to us it felt (and still does feel) like a lifetime!”
We’re in this together
billie Jean and vili continue to support each other through a long ‘unexplained’ journey.
As shared for Fertility Week
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The embryo didn’t attach and continue to grow, the IVF was unsuccessful. We were absolutely devastated and my husband said at the time he could not go through with that again. As well as the physical ordeal my body had just gone through, we were mentally and emotionally broken.
Now in 2019, all year I have been pondering in my head over and over – different dates and when we could look at trying IVF again, this time publicly because we could not afford another round privately. I replayed the following dates in my head:
• Began trying in March 2015• Eligible for Public Funding five
years later, which would be March 2020
• There is then an approximate wait of 1.5–2 years to get from the bottom of that list to the top.
• This would mean there’s a chance we might not get IVF publicly funded until March 2022.
That’s another THREE YEARS from now! I was losing sleep and becoming depressed at the thought we would continue to have no luck naturally and now thinking we might not qualify for public funding until I am 30 years old – which in itself doesn’t sound too great medically!
Knowing that my husband wasn’t ready to go through IVF again, I tried to remain positive and not put that pressure on us emotionally and financially by talking about another IVF round. However, getting a pay rise at work tempted me to give Vili a ‘proposal’ – we could take out another loan on the mortgage and use the extra pay to cover the repayments. After standing side by
side, feeling each other’s pain, this small opportunity tempted the both of us to go for it again. We are desperate and agreed we couldn’t wait until 2022 to try again.
We had a meeting with our mortgage broker to get another loan on our home and have recently signed the consent forms to begin our second round of (private) IVF again in November this year.
If this one is again unsuccessful, we have to sadly accept the fact there is a possibility our next IVF may not be for another three years as we’re both aware we could not afford to pay for another round privately.
Wondering why
Being labelled ‘unexplained’ is incredibly hard as we live day to day wondering WHY. Why we’re not parents yet? Why we can’t conceive again naturally? What’s wrong with us?
I never knew how common fertility issues were and I sure didn’t think we would ever have them. Unfortunately, it’s not until you’re ready and the time is right to begin your own family when you discover it’s not that easy for some. I question the criteria for Public Funding and struggle knowing IVF might help us but it’s a matter of making the ‘list’. Infertility is infertility, regardless of whether it can be explained or not and to not be given hope and treatment because you either can’t afford it or don’t meet a specific criteria, really sucks!
We’re grateful for all the support from our whaānau and friends – and of course couldn’t have gotten this far without our love for each other. We feel for all of those going through their own infertility journey and can only wish them the absolute best from our hearts to theirs.
“I question the criteria for Public Funding and struggle knowing IVF might help us but it’s a matter of making the ‘list’. Infertility is infertility, regardless of whether it can be explained or not.”
conTacT us• phone: 0800 333 306 • email: [email protected] • web: www.fertilitynz.org.nz • post: Fertility New Zealand, PO Box 28262, Remuera, Auckland 1541 • Visit us on Facebook!
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noticeboard
This material is supported by way of an educational grant from bayer new Zealand Limited. The information submitted is intended to assist health care professionals and patients in forming their own conclusions and making decisions, but may not represent a comprehensive listing of all available information on the subject. The views and opinions expressed by the individual presenters do not necessarily represent the opinion of bayer new Zealand Limited.
Fertility new Zealand accepts no responsibility for any information contained in this publication, and the views are not necessarily those of Fertility new Zealand. © permission to reprint any articles from this magazine must be sought from Fertility new Zealand prior to publication.
Support Group Dates Support information
How can we help you?
Fertility NZ support [email protected]
(Fertility Support Series, Casual Coffee, Pregnant After Fertility Treatment)
[email protected] (Secondary Infertility)
Hamilton [email protected]
Tauranga [email protected]
Rotorua [email protected]
hawke’s [email protected]
Taranaki [email protected]
West Coast [email protected]
Central [email protected]
Join our new group in TaurangaOur new Tauranga support volunteers, Nicki and Trish know from their own experiences the challenges of a fertility journey and how valuable it can be to connect with others who ‘get it’. That’s why they have dedicated their time to support the Tauranga community and facilitate local meetings, held on the last weekend of every second month. The free-of-charge sessions are very casual and provide an opportunity to have a ‘coffee and a chat’ in a safe space with other locals also going through the challenges of infertility. Please contact Nicki or Trish on [email protected] or visit www.facebook.com/sharingourjourneystogether/ to enquire or register your interest.
aucklaNdCASuAl CoFFee GrouPGroup meets monthly on Wednesdays. 13th Nov; 12th Feb 2020; 18th Mar; 15th Apr
FerTiliTY SuPPorT SerieSSemi-structured course, ideal for couples – spaces are limited. Resuming in March 2020 – dates to be confirmed.
PreGNANT AFTer FerTiliTY TreATmeNTGroup meets monthly on Sundays. 24th Nov; 2nd Feb 2020; 1st Mar; 5th Apr
SeCoNDArY iNFerTiliTYFor people who already have one child or more. Group meets on last Sunday of every month. 24th Nov; 23rd Feb 2020; 29th Mar
SiNGle moTherS BY ChoiCeMeet monthly, contact for details (see right).
HamIltON Group meets every third Saturday at 10am. 15th Feb 2020; 21st Mar; 18th Apr
tauraNga (New)Group meets every two months on a Saturday at 10.30am. Dec 7th; 25th Jan 2020; 28th Mar
wellINgtON‘Support and Connect’ group meets every six weeks on a Wednesday. 12th Feb 2020
cHrIStcHurcHGroup meets monthly on a weeknight evening 6.30-8pm. 2020 dates to be confirmed in the new year (contact details on right). 27th Nov
duNedINGroup meets every six weeks on a Tuesday. 26th Nov; 18th Feb 2020; 31st Mar
INvercargIllGroup meets on the fourth Wednesday of every month. 27th Nov; 22nd Jan 2020; 26th Feb; 25th Mar
